Every M/W/F, I’m chronicling my experiences enduring a flare in “The Crohn’s Saga”, but I’ve also decided to add this section as an educational resource. My hope is to answer some common questions about Crohn’s Disease, dispel some myths, and shed some light on the disease itself and the lifestyle of the afflicted.
First things first – I am not a doctor. I’ve lived with Crohn’s Disease for 25 years now, and this information is based on my experiences and personal research only. Crohn’s affects everyone differently, so what works or doesn’t work for me may be different from what works or doesn’t work for others.
If you have any other questions, please feel free to contact me via our Contact Us page.
Common Questions About Crohn’s Disease
What is Crohn’s Disease?
Crohn’s Disease is an autoimmune disease that typically afflicts both the small and large intestines. It typically manifests as sores on the intestinal lining.
What causes Crohn’s Disease?
Unfortunately, no one knows. There is a lot of research being done on genetic predisposition, diet, environment, and lifestyle, but a conclusive cause has yet to be discovered.
What are Crohn’s symptoms?
Symptoms of Crohn’s Disease are highly varied.
Physical: Diarrhea and stomach pain occur in most cases. Fatigue, joint pain, nausea, vomiting, loss of appetite, and ensuing weight loss are also common. In severe cases, sores from the intestines can migrate down to the anus or up into the stomach, the esophagus, and the mouth. During a flare I had as a teenager, I had dozens of sores in my mouth and throat that were so painful I was unable to eat solids for weeks.
Mental: Longtime sufferers can experience depression. Crohn’s can alter the way the body absorbs chemicals that are necessary for the brain to process serotonin. It is common for Crohn’s patients to take antidepressants.
What does Crohn’s Disease feel like?
In short, lousy and painful.
In terms of discomfort, I commonly suffer from diarrhea, nausea, vomiting, and bloating during a flare. I am constantly fatigued too. People sometimes mistake fatigue with feeling tired, but the two are very different. Tired implies I’m sleepy and I want to go to bed. Fatigue is a penetrating weariness. When I’m sick, I can barely move, let alone go to work, do chores around the house, or be social. Think about it. Your body is simultaneously eating itself and trying to fight back. It drains you.
In terms of pain, where do I start? I get joint pain in my hands and knees. Simple acts like writing, drawing, typing, and standing up become unbearable. Stomach pain is also terrible. Have you ever had a sore in your mouth, eaten potato chips, and had a chip dig into the sore? It hurts, right? Now imagine that in your stomach. The intestines work by cramping to push along food. Crohn’s causes sores in the intestines, so digestion is painful, since the food is being squeezed by inflamed tissue. I’ve also previously had fissures, which are splits in the tissue in the anus. Going to the bathroom feels like pooping shards of glass. They are extremely painful, often bleed, and sometimes require surgery.
How is Crohn’s Disease diagnosed?
Since the symptoms of Crohn’s are so varied, everyone has a different story for this. Common to most is that it takes a long time. Doctors usually order small bowel MRIs, colonoscopies, and blood work to help diagnose.
For me, the summer I turned 11, I started experiencing stomach pain and pain when going to the bathroom. I was also getting fatigued and losing a lot of weight. After a few weeks, I finally told my parents. We went to the doctor who then sent me to a gastroenterologist. I had to have x-rays, blood tests, an upper GI, and a colonoscopy before they finally decided it was Crohn’s. The entire process took about 6 months. It then took another 6 months of medication before I finally went into remission.
What are the treatments for Crohn’s Disease?
Treatments for Crohn’s are as varied as the symptoms themselves. To start, doctors usually prescribe prednisone during a flare. Prednisone is an anti-inflammatory steroid that one cannot be on long term, but it helps reduce inflammation and allows other medicines to get a foothold. Otherwise, there are a ton of medicines out there and different people respond differently to all of them. Finding the right treatment is usually a matter of trial and error over a few months. I’m not going to list all of the medicines I’ve been on over the years, but I’ve responded best to biologics. As a heads up, patients can become immune to medicines after extended use. Personally, I’ve been on and have become immune to almost everything out there. I’m presently on the last FDA-approved drug in the market and if I reject this one, it’s back to experimental drug trials or surgery.
Why do Crohn’s patients need surgery?
I’ve had two surgeries so far. The first was due to a build-up of scar tissue 7 years into my disease and 6 months into a flare. Basically, years of sores cyclically growing and healing built up so much scar tissue in my intestines that I could no longer digest. At the time of this surgery, I was 18 years old, 5’11” tall, and I weighed 98 lbs. In the weeks leading up to the surgery, I could barely eat. My friends used to tease me because I would only eat once a day; usually one rice cake with peanut butter. The week before surgery, I couldn’t even keep down that. Days before surgery, I started losing the ability to keep down liquids. My digestive tract was closed.
Spoiler Alert – I’ve chronicled the events surrounding my second surgery in “The Crohn’s Saga”. Every M/W/F, I post on my experiences from the start of the flare, through surgery, and into recovery. This time, I needed surgery because of both pervasive deep sores and built up scar tissue. Doctors tried everything they could in terms of medicines, but nothing worked. My intestines were simply shot and I had to have my colon removed. The surgeon said things were so bad that my intestine was literally disintegrating in his fingers as he tried to remove it. Gross, right? They were also unable to remove an infected section of my small intestine, so it is possible I will need another surgery for that too. Time will tell.
How does Crohn’s Disease impact one’s lifestyle?
A person in remission can lead a totally normal life. In fact, there are several athletes, celebrities, and other prominent figures with Crohn’s. Some people in remission still monitor their diet, but sometimes, even that isn’t necessary
Living with a flare is a different story. Since many people with Crohn’s experience diarrhea, they are often afraid that they won’t be able to find a bathroom. When I’m sick and I go out, the first thing I do is figure out where the bathroom is, just in case. I panic if there is only one, since it could be occupied when I need to go. Sometimes I don’t go out at all because I don’t trust my body. In addition to the bathroom situation, pain and energy levels also affect lifestyle. Sleep and rest become critical. I constantly have to cancel plans or call in sick to work because I just can’t make it out. Diet is also usually restricted during a flare. Please see more about that below.
There is an emotional dimension to Crohn’s as well. Let’s face it – it’s an embarrassing disease. Fear of public humiliation is constant during a flare and the disease can be awkward to discuss. When I’m in remission, I dread getting sick again to the point that getting a flare is almost a relief. I’m told that’s common with all chronic illnesses. I also feel terrible about how often I have to bail socially. It’s frustrating not being able to live my life as I want, but I do my best to cope. Lastly, mortality comes up a lot. I probably have a lowered life expectancy. I’ve always been too scared to ask, but I think about death a lot, especially during a flare. I’m often accused of being dark or morbid, but this awareness has also lead me to take some of the risks I’ve been most proud of in my life.
What are Crohn’s Disease flare ups?
A flare up or flare refers to increased activity in the Crohn’s. Basically, remission means “I’m fine” and flare means “I’m sick”.
What triggers a flare in Crohn’s Disease?
It’s never just one thing, but looking back, I can spot correlations in events leading up to flares. Overall, I’ve noticed I get sick immediately after periods of extreme stress during which I was getting insufficient sleep. For example, my worst flares started the day after I graduated high school, the day after I completed grad school, and the day after I left a stressful job. It’s like my body knows to keep itself together when things are rough, then it lets go when the pressure is off.
What should I do if my Crohn’s Disease flares?
I’m almost always in denial at the beginning of a flare. I notice the symptoms starting up, I get scared, and I pretend everything is ok. It usually takes me a few weeks to call my doctor. Don’t be like me. Go see your doctor when you notice the symptoms starting up. Get plenty of rest (during a flare I need 10-12 hours a day), do your best to eliminate stress, and watch what you eat.
What is the best diet for Crohn’s Disease?
There are tons of theories out there on this one. Doctors will tell you to avoid spicy foods, nuts, popcorn, and seeds, but you’re usually on your own after that. I’ve played around with several diets and the most effective for me was the paleo diet. Look it up online for details, but basically, you avoid anything processed. No gluten, no refined sugar, no dairy, and no alcohol. Just meat, fruits, and veggies. For a while, this diet was very effective at helping me control inflammation. In my experience, a diet should only supplement and never replace a medical treatment. See my series on “The IBD Siren” for details about my experiences with specific foods.
What are the best exercises for Crohn’s Disease?
As I said above, there are several athletes with Crohn’s. This means that nothing is really off limits. The exercises I’ve found most effective though are walking and yoga. Both of these are low stress and low impact. They’re the relaxing forms of exercise I guess. Yoga has been particularly helpful for me. It allows me to be physical while keeping calm and releasing stress.
What vitamins or supplements work best for Crohn’s Disease?
Prednisone can cause brittle bones over the years, so doctors often recommend calcium supplements. Doctors may also recommend iron during a flare to help prevent anemia. Other than that, it’s a crapshoot. I feel slightly better when I take fish oil, but that could be in my head. For a long time, I thought probiotics would be a huge help, but I never found them to be very effective, so I gave up on them. Again, these are just my experiences, and again, I don’t think vitamins or supplements should ever replace medical therapies.
Is there anything I should I avoid with Crohn’s Disease?
Lifestyle triggers can be stress, lack of sleep, and improper diet. I try to eat a balanced diet, avoid stress, and create space to get enough rest. Foods to avoid are seeds, nuts, popcorn, and spicy foods, since they can irritate the bowels. I’ve never really had problems with alcohol, but I’ve noticed that beer can cause bloat and wine can cause heartburn. Finally, I’ve heard that cigarettes are especially bad for patients with Crohn’s.
What is the difference between Crohn’s Disease and Ulcerative Colitis?
Both are inflammatory bowel diseases, so it’s easy for an outsider to confuse them. In my limited knowledge, the main difference is that Crohn’s Disease can appear anywhere in the digestive tract whereas Ulcerative Colitis is localized to the colon only. Crohn’s can also damage the skin and eyes.
What is the difference between IBS and IBD?
IBS stands for irritable bowel syndrome. IBD stands for inflammatory bowel disease. Both Crohn’s and Colitis are inflammatory bowel diseases.
Can Crohn’s Disease affect fertility?
This is not an issue when disease is in remission, but active Crohn’s can cause issues that lower fertility in both men and women. Medicines and surgeries can also be detrimental.
Is Crohn’s Disease fatal?
Crohn’s itself is not a terminal disease, but it can cause complications that result in death. The disease itself and its treatments can lead to certain types of organ degeneration and cancer.
My friend has Crohn’s, how should I treat him/her?
If you are close enough to the person, just ask. I’m always happy to field honest questions from people I’m close to. Otherwise, it depends. For example, when I’m in remission, I want nothing to do with Crohn’s. I don’t research anything, I don’t like to talk to my doctors, and I don’t like to talk about the disease period. A lot of people in remission live in constant dread of another flare. They are aware of what they’ve been through and where things can go. They don’t want to be reminded of it, so it’s usually best to not bother them about it.
During a flare, things are more complicated. If your friend is quiet about it, just let it be. If you notice he or she is hurting, you can offer to help, but if they refuse or don’t want to talk about it, again just let it be. Never call attention to it in public. Also, be aware that suffering is an isolating experience. Don’t try to relate to someone with Crohn’s by telling him or her that your stomach hurts or that you sometimes have diarrhea. I’m offended when people do that. We are also aware of what’s going on and what we look like, so please don’t tell us we look sick, pale, skinny, or fat. We know. Finally, and this is an extremely personal one, don’t ever under any circumstances tell someone suffering from Crohn’s that god has a plan. That’s too easy to say and absolutely infuriating to hear.